Friday, September 25, 2009

A Fighting Chance

The fat lady has sung and yours truly has done the impossible. 55+hours of lecture is complete. Lucky for me my brain is amazing. Glenn Doman, Institute founder, said "The brain is the only container that has this characteristic: The more you put into it the more it will hold." If there is only one thing that I've learned this week it is that the human noodle is frighteningly amazing. The human brain has, by conservative estimates, a trillion cells. Now while that might not be a big number if you're the leader of the free world, to me, a railroader from Utah, it's HUGE. Now Charlie's brain has been profoundly damaged but in no way has his entire brain been hurt. Since he got sick I've been obsessed with how many brain cells he has lost, how hurt his thinker is. I've never realized how much good brain he has left. Call me a pessimist, -Guilty. I blame Gammy, my grandmother. I grew up watching every BYU game with her and no matter who the Y was playing we were sure to get beat by 50. She kept this pessimism until the Cougs were up by 30 and only then would her faulty elimination clear up. Her condition was almost Pavlovian, Cougs get scored on she'd head to the lou.

Charlie has millions- even billions of healthy brain cells left and now begins an almost impossible journey of catering to those healthy bits. The places in Char's head that have been hurt are sadly dead. They are not coming back. The miracle of the brain is that the other parts are very willing to pick up the slack, we just have to tell/show them how. That makes it sound easy, it won't be. However, we have seen this week with our own eyes living evidence that it can happen. Some have said that we are crazy for coming here; "They'll just give you false hope and take your money with no guarantees." The thing that I've discovered from other parents here is that we don't want or need guarantees, we just want to be given a fighting chance.

What we are about to embark on is going to be monumental. We are going to attempt to heal the brain of our hurt little boy and for this we just might be crazy. We are going to try to get Charlie to see better, hear well, feel pain and pleasure, crawl and maybe someday walk, communicate, use his hands and even read. I know that our doc's and therapist, who we love dearly, are going to think we are crazy. But if they are honest with you, even they will tell you Char isn't progressing. So for us it would be foolish to continue doing the same things we've been doing and expect different results. This is our biggest motivation for wanting to try something different. I'm not saying that we are going to bag all of Char's other therapies, we're not. We simply want to do more, differently. We look at this as a change in direction. For the last 16 months we've been treating the symptoms of this brain injury by focusing on stiff joints, weak muscles and foul mood. This program is designed to treat the injury itself, the brain.

What sucks for all of you is that we're going to need your help. Since Charlie got sick so many of you have been there for us; sacrificing time, effort, $ all to help our boy. Now I'm asking you again. We need your help. This program takes bodies and time. What I don't want is our plea for help to make us a social pariah. If you don't want to help or aren't able, that's totally fine. But we don't want you to avoid us or Charlie because your worried we will bug you for help. We won't. When we get home, my sweet bride will get the schedule set up and the program outlined and we will let you all know about it.

You don't know us, but we have followed Char's story for many months. I am a firm believer that parents must "go with their gut," do what you feel is the best thing for your boy! Don't worry about what anybody else says or thinks, and let the results come what may. You know what is best for Charlie.

I have been following your amazing families story for over a year now and I am so touched by your devotion to one another firstly and then to your sweet kids! I admire so much what you are doing and want you to know that your family is often in my thoughts and prayers! I wish I could do more but for now that is what I am 100% wiling and able to continue in your families behalf! GOOD LUCK CHARLIE!

My people and I are in! We will do anything for you guys! Rob... your sister is funny! Tuesdays are good for me... not so good for my girls! Thursday is a perfect night! Ok so really anytime you need me I'm there! (sounds likt a song!)Very hopeful!

You guys are awesome. What a courageous journey to begin: going to the Institutes, doing all the crawling, and coming home with hope & a plan of attack. I so wish I lived in Utah to be able to help. But I continue to pray for your family. Lots of love,Jen Gardner Savage

I'm friends with Kari Davis, and up at PCMC right now with my 3 week old baby who has bacterial meningitis. She had surgery last Tuesday because she had abcesses, but is doing really well now. Her injury is all in the left fronal lobe. I'd be so interested to hear what you learned, and help with your cute Charlie. I live by Kari, she can give you my info. or our blog is www.thecary-family.blogspot.com Heather Cary

You know we are in with whatever we can do from somewhat afar. I'm so excited for the hope of possibilities before not thought of. Please let me know when and how we can be there for you all. We love you and Emma can't wait to snug up next to her cousin Char again in a few weeks!